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  1. Hi, We are in a similar situation. My son is now 16 and was awarded DLA only two months prior to his 16th birthday (I had never claimed before). I applied for PIP an my son had recently had an interview from the Independent Assessment Service. We are currently awaiting the result.
  2. hsmum


    Hello Noogsy, Thank you for your encouragement. You are completely right about the small steps. We have a CIN (Child in Need) meeting on Wednesday and formerly, I would have gone into the with a list of questions to ask the various agencies represented there. However, as you have found, I think there is little they can or will do. I have approached a voluntary organisation and arranged a provisional meeting between my eldest son and a 'buddy' who could mentor him. My eldest seems to be positive about the meeting, but things can change over the course of the week, I have also requested assessment for an Education Health and Care plan for my youngest (if he will participate). However, knowing that you have gone through something similar and your sons have come out so well is a huge ray of hope for me.
  3. hsmum


    Hello, It is a little time since I have posted here. This is mainly because we have gone through a bit of a family crisis. However, I will try to keep this post short and to the point. Basically, both my sons are experiencing extreme anxiety. My youngest is 14.5 and has not attended school for over a year. He receives 5 hours of home tuition each week at my house (he resides with my husband) but frequently, the first half hour of each session is taken up with me trying to coax him out of the bathroom because he locks himself away when the home tutor comes. He has an extreme health anxiety as well, so if the tutor clears her throat he will run from the room and, again, require coaxing to return. My youngest also, has no friends and will participate in no activities apart from visits to my brother's farm. My eldest is 16.5 and also receives no education or training. His anxiety is more extreme and involves serious panic attacks in which he shakes and screams (and is physically sick) and he experiences auditory and visual hallucinations when he is distressed. Both boys are under CAMHS and my eldest takes a considerable amount of medication for his symptoms. Until recently the boys were subject to Child Protection Plans due to emotional abuse from their father (who is on the autism spectrum). Their father (my husband) has mental ill health as well and sees a psychologist on a weekly basis. (His autism was not the cause of his behaviour). Please can someone tell me how I can encourage the boys to participate in something outside the home? I fear for them as their anxiety grows and they become more depressed and 'dysfunctional' through complete social isolation. I also fear for their future. My eldest has an Education Health and Care plan but the local authority are reluctant to review it until he can meet unfamiliar people without panicking. Furthermore, when I separated from my husband (due to the child protection issues) I gave up my main job and increased the distance teaching that I do. However, the boys' continuing problems with anxiety may mean that I will not even be able to work from home. I am becoming pretty desperate. My eldest has a diagnosis of Asperger syndrome and professionals have suggested that my youngest fits the criteria for PDA, but he has refused formal assessments.
  4. Hello, My son is just coming out of a phase where he hid from anyone outside the family and ceased to engage with any purposeful activity. We were going through a very stressful time and his behaviour was definitely linked to he poor mental health.Now, at least he goes out with his outreach worker and he visits a shop once a day. However, the reclusive and isolating behaviour is not only debilitating for my osn, but it has , at times, rendered me housebound.
  5. Hello, I apologise for not writing from personal experience. However, my eldest son has AS and mental health problems. We have been going through a terribly stressful time which involves a lot of change. The stress has intensified his ritualistic behaviour and accelerated his mental health difficulties to the point where he has been hallucinating and hearing voices. The agencies that we have worked with grossly underestimated the affect stress has on people with AS.
  6. Please ignore this message. My kitten pounced on the keyboard and sent it before it was ready.
  7. Hello, I have not posted here for a while due to family circumstances. However, i would appreciate a little advice. My eldest son is 16. His mainstream school placement broke down at the beginning of Year 10 when his mental health deteriorated (he has Asperger's syndrome and developed mixed anxiety and depression). He was an inpatient in a CAMHS unit for several months and his old school said they could no longer meet his needs (they had been struggling a little for some time). He acquired a place at a Special School which specialised in students with autism, but there was a significant delay to his starting date and his mental health deteriorated again to the point where he spent most of his time crying when he got to school. Ny son said that he wanted to apply to a mainstream college. He was interviewed for a Level One Horticulture course, but after interview and consultation with the LA, the college said they could not meet his needs. He went for a look around a specialised college which has been very
  8. Hello, My son (16) disclosed information which has led to a Child Protection investigation through which both my children have been put on a Child Protection Plan. My son and I have left the family home and lodge with my sister and her family. The CP issues are complex and relate largely to behaviour between my son and his brother (14) which resulted in sexual bullying by the younger boy. Since we left home my eldest son has told me that he wants to attend a mainstream college rather than try for a specialised residential placement, which was what was originally planned. I respect his wishes and he has an interview for a course in September. He chose a course that is practical rather than academic and at a basic level so he would have less mental pressure when he started and he could concentrate on adapting to college, working on his Maths and English and making friends. However, he is incredibly anxious. He has several panic attacks each day and manages them with a variety of strategies e.g. writing down his thoughts, taking himself to a quiet place, listening to music, breathing exercises and so on. He is also expressing feelings of guilt because he thinks he has broken up the family and should have 'manned up' to his brother. I have told him that he did the right thing through making the disclosure because if the behaviour had continued his mental heath would have broken and his brother would have ended up with a criminal record. My youngest son also has mental health difficulties and I support him as much as I can. He lives with my husband and we are sorting out regular contact. However, my eldest seems to have so much to cope with and so much uncertainty and I just really frightened that the college placement will break down and cause him even more distress. Has anyone any advice about how to help him cope with the stress caused by this situation?
  9. This is a very interesting thread. My son experienced visual and aural sensations including seeing flashing lights, hearing voices and even feeling like the room was closing in on him. He was diagnosed with Todd's syndrome or Alice in Wonderland syndrome which is a form of migraine with quite strong sensory aura. Later, when his anxiety increased he reported hearing voices again and the psychiatrist said these were related to anxiety rather than psychosis. We found the medical professionals very helpful.
  10. Hello, I have just returned from a meeting in which it became apparent that my son's placement at his special school has broken down and it is not likely that he will be returning there after summer. The Head of school stated that their provision could not meet my son's mental health needs and that, although it is likely that the LA will implore us to give the placement more time, any extension of the provision will simply add to my son's sense of failure and deny him the possibility of finding somewhere more suitable. The Head also reported that due to risk factors, my son could not access the residential provision that we have been asking for since his discharge from hospital in October. Although disappointed, we tend to agree with the Head and the senior consultant psychiatrist also seems willing to write a report stating exactly what my son needs in a provision to help our son's case. The report will go to the Local Authority. So, we are almost at the end of the academic year; we have no idea where my son will go after summer and we face a long summer break time where there will be uncertainty and lack of activity. I want to start looking for an alternative placement straight away, but I do not know where to start. We need something that is residential or at least provides weekly boarding facilities, caters for post 16 students and can support mental health difficulties that are complicated by ASC. My son is quite bright and has no directly challenging behaviour, but his mood is often extremely low. Has anyone any suggestions where we could start looking? We would prefer the Yorkshire area, but not exclusively so.
  11. Hi Special Talent, I apologise for my error in the previous post. The figures for the various categories of LD are indeed lower than I stated. However, I will expand on the issue a little. Irrespective of IQ, in my experience, many people with AS struggle with life skills (in various ways) and really need support to live independently. I realise that i am making sweeping generalisations here and there will be many people with AS who have no such problems. However, because access to services and support is often dependent upon 'quantifiable' criteria such as IQ etc. it may be difficult for those people who have significant need of support, but who do not meet the criteria for access to obtain it. I would say that the literature that I have read suggests there is not a direct correlation between AS and learning disability (learning difficulties may be a different matter) but as Livelife has indicated above, there are other factors which may prove a barrier to learning for people with AS and related 'conditions' resulting in significant underachievement
  12. Hello, It has been quite a difficult year for my family and in particular for my two sons (14 and 16). In February my son was accepted on the roll at a school which specialises in meeting the needs of young people with ASC/ADHD. However, it seems like the placement has broken down and there is an emergency meeting on Tuesday to discuss next steps. Meanwhile, my youngest son has been refusing school since January and is diagnosed with Generalised Anxiety Disorder. My husband, who is the boys' main carer, finds the situation incredibly difficult to deal with (he also has AS) and there are multiple agencies involved with our family. My commute to work (2.5 -4 hours each way) extends the time I am away from home to 13 or 14 hours a day and leaves me drained in the evening. So, I am considering moving the family much closer to where I work. There is an excellent specialist college in the area where, if the authorities permit, my son could attend as a day student or lodge as a weekly boarder. Being closer to work would mean I could try to home school my youngest and perhaps introduce him to a vocational course in the college where I work next year. Yet, I feel so sad when I think about this. It almost feels like everything has failed and I keep worrying that I will simply move the problem from one area to another because there is no guarantee that my plan will succeed. Another problem is that my job is not secure and I had imagined that if any change was to take place it would be that I would find a job closer to our current location. In fact, I am full of doubt and worry and I suppose i am just looking for a bit of advice or support so that I do not go to the meeting next week unable to present a coherent case. Thanks J .
  13. Hello, Several students who I teach cannot access support for independent or supported living because they do not meet the criteria required for support from the Learning Disabilities team. To access help from the Learning Disabilities team, clients used to be assessed by the team and they were not funded for support unless their IQ was 70 or less (MLD). Now I believe the IQ requirement is much lower, possibly 50 or less (SLD). The students had IQs of average or above average range, but their coping skills and social awareness made them far too vulnerable to live independently. I may have the exact figures wrong, but in general terms, many of the students with AS had average or above average IQs.
  14. Hello, It has been a little time since I wrote on this forum. Basically, the situation at home has become quite complicated and I would really appreciate some guidance about the best way to respond. My eldest son (nearly 16) has AS and developed some mental health difficulties last year which resulted in a 7 month inpatient admission to a CAMHS unit. He was discharged in October and offered a place at a special school as a day pupil, with a view to transitioning to residential placement over time. However, the integration to school has been slow and complicated by my son's continuing mental health difficulties and now, after a series of incidents of self harm, readmission to the CAMHS unit seems likely. Meanwhile, my younger son (nearly 14) has been refusing school and is diagnosed with Generalised Anxiety Disorder. He has been referred to a PRU, but refuses to attend that, so home tuition (provided by the LA) looks like the next step. Work (and commuting) commitments take me away from home up to 14 hours a day so my husband looks after the boys. My husband has AS himself and finds it hard to cope with the children's increasingly challenging behaviour. Children's Social Care are involved with our family and my husband receives some support from a Family Intervention Team worker. My problem is that I simply don't know what to do. A huge part of me wants to take extended leave from work, jump into the situation with a very hands on approach and see if my presence and support can make a difference. Yet I wonder how effective this would be. We have so much intervention; the boys' issues are primarily mental health matters and jeopardising our only source of income may only add to the pressure we are under as a family. I would really appreciate any advice, particularly from people who may have experienced something similar to this.
  15. Hi, My husband undertook the ADOS assessment three years ago. He was 52 and he had similar issues. His mother (who was 80) could not really remember what he was like as a child and I was not as helpful as I should have been (due to problems in the relationship). The doctors, however, understood the complexities surrounding adult assessment, and my husband received his diagnosis. I am really glad that he did, because it has provided me with a framework within which to understand my husband's issues and it has helped me to find ways of modifying my own behaviour. So please don't worry, observations from parents and partners are only part of the assessment.
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